Quick update - a couple of weeks ago I met with the dr who ordered the OAT test. He was primarily focused on my low VMA and felt that was either indicative of a deficiency or COMT mutation.
His suggestions were SAMe and NAD. I tried SAMe that night and did not respond well at all. I took some niacin and that helped significantly. Since then I've been taking niacin on and off. I haven't had a lot of time but did a bit of quick research and am wondering about overmethylation. Seems counter to everything I've either read or been told at this point but niacin in small doses definitely seems to be a good thing. To much however is not good so it's a fine line which is consistent with what the dr said about methylation supplements.
Someone gave me a couple of bottles of 5hr Energy a while ago. I just happened across them the other day and read the ingredients. It had an interesting mix of a number of things I've been experimenting with recently so I decided to give it a try. I was expecting a negative reaction however it seemed to agree with me. Ended up buying more but Costco Kirkland brand. It's only been a few days trying the energy shots but from what I can tell I think it will be good. Maybe it's the niacin?
Since starting niacin sleep has been quite good. Same with the energy shots - what I like about the shots is I don't seem to be walking such a fine like with the niacin alone.
All of this is recent and may very well change but I wanted to share.
Also, I'm still talking the probiotics which are definitely a good thing however on the probitoics alone I still had some low level of sleep disturbance. More probiotics seemed to equal better sleep but not 100% peaceful. Then I came across niacin/energy shots and while I've found a number of things that have helped to various degrees this seems to be the most effective.
You mentioned you've been fairly active lately. Is there any correlation between your level of activity and the vibrations?
Quick update - things continue to go well. Very well actually. Since starting niacin and in particular adding methyfolate I've been sleeping peacefully.
I also am not getting up constantly at night to use the bathroom. More often than not I'm sleeping through the night which in and of itself is a fairly remarkable change.
At this point I'm taking methyfolate, niacin/energy shot and probiotics. Since adding the methyfolate I've been needing much less niacin. I've also been paying attention to my potassium intake. I'm not doing anything specific there other than making sure I get a fair bit from my diet.
Apparently the MTHFR mutation is part of all of this. I assumed not for any number of reasons including the dr who gave me the test and another dr who is an 'expert' in the field was completely dismissive that it could be the problem.
Clearly it's more complicated than that though because I've had varying degree of success with GI specific interventions as well. And the electrolyte mix which I can use in lieu of niacin.
So I have been on clarazapam for a couple weeks now. It doesn't fix tremors but looking at my Fitbit sleep I went from waking or agitated sleep 15-25 times to one 3-5. I still tremor but now not near as many times. Very little side effects. I like the confidence enhanced feeling too. Not sure how long my liver will like it though. I am only on 2 mg per night. Once you take the pill you have about 1-2 hours then it is bed time.
Hmmm. The whole 4-5am thing is interesting too. In various other Googling I've done, that seems to be the magic timeframe for people who have sleep problems. Maybe that's just when we start to cycle out of deep sleep more frequently. Everyone wakes up periodically during the night. Maybe we just notice it more because of the vibrations which then tend to keep us from going back into deeper sleep.
So, its been a few months since I have posted and I noticed Toby asking for updates on people. So I thought I would chime in. As I have said previously after hundreds of tests at Mayo Clinic. They diagnosed my tremors as benign muscular fasciculation.
Great... Now what. Well that didn't get much of an answer. It won't kill you and should eventually go away.
As a reminder mine is in the upper chest, and keeps me up all night. After extensive cardiac tests, tests for Lou Gherigs... Etc this benign muscular condition is what they seem happy with.
What I am doing now is taking.5 mg Xanax at night with Melatonin. It keeps me asleep for 6to 7 hours. I am also on cpap machine. This with a magnesium supplement has greatly reduced the tremors. They are there but not causing the anxiety... Fear... And dread I had for months. Waking up in the middle of the night in tears from lack of sleep and major tremors is gone.
I definitely think years of sleep apnea has been a big part of this. And stress adds to it.. But doesn't cause it. I went a week without the magnesium supplements definitely made things worse. So.. While I am still living with it it, it is greatly reduced and doesn't affect my life like it used to. Mayo keeps saying there research says... Eventually... This will pass. Yeah.. Thanks :)
I may try adding niacin as you guys suggested.. Can't hurt. But I swear by the magnesium (and by the way my good work should normal levels of magnesium) and my cpap machine helps. The Xanax just knocks me out.. And hopefully I can wear off that in a few months as I hate a benzo... Even.5 MG a night.
Biggest advice... This is not deadly and there are ways to lessen it. Don't give up.
Also... A sleeping ritual helps... Hot bath... With Epson salts... Herbal tea... Relaxing music... All help.
Take care guys... I'll check in more often.
So in other words, you're saying the "tremors" are actually real physical rhythmic motions whereas the vibrations are more of a neurological thing that you can feel, but that can't be observed? Is that right? I used to have something that felt more like a lower-frequency tremor that my wife could actually feel if she touched me. Those seemed to happen if I got woken out of sleep suddenly. I figured it was some kind of anxiety reaction. I haven't had those for a while.
The "vibrations" are higher-frequency and feel more like a light to medium electric current. For me, the vibrations are controlled by the Tegretol although I sometimes have some break-through vibrations (also around 4:30-5:00 am). However, even though the vibrations are mostly controlled, I'm still waking up multiple times a night with some sort of GI issue that usually included reflux.
A reminder that I have sleep apnea. I was recently fitted with a dental appliance since CPAP was not working out for me. The sleep dentist I'm seeing pointed out that sleep apnea can sometimes cause reflux since you create a negative pressure in your esophagus that actually ***** up stomach fluids (sorry for the TMI). I believe that my sleep apnea and definitely reflux and maybe some additional GI issues are part of the problem.
I'll write more later.
Wanted to check-in, provide an update and see how everyone else is doing.
About a week after my last post I started getting mild vibrations starting around 5AM or so and lasting until I got up. Mildly annoying at worst.
Prior to starting the HCl I was having tremors - to me those are significantly different. I define tremor as a rhythmic motion. Those were significantly more intense and the more intense the tremor the worse I would feel for the 1st few hours of the day. Longer if the tremors were intense. A hangover is the best way I can describe it - the intensity of the "hangover" being directly correlated to the intensity of the tremors.
With the vibrations I always wake up feeling fine. So to me while the shaking part may be somewhat similar they do seem to be quite different animals.
As far as I can tell nothing changed between sleep being peaceful and the start of the vibrations. They started very slight - wasn't sure if I was having any type of motion or not - and got a bit more intense. I can now clearly notice them but outside of being a bit annoying I'm not having any type of issues.
That being said, it's obviously not "normal" and I have to assume that my body still isn't 100% happy with something.
I still believe it to be nutritionally related. I believe the addition of the HCl allowed for better absorption which eliminated the tremors. Why the vibrations started is beyond me. Maybe the addition of the HCl favors absorption of something at the expense of something else? That's my best guess.
I'm paying attention to things but am not being strict in any respect. To this point I cannot correlate the vibrations to anything diet or lifestyle related.
I've continued with the HCl as described before and that's pretty much it. I've experimented a bit with some of the other things I have here but without any real success.
As I write this I'm wondering if reducing the amount of HCl may make a difference. Too much somehow creating a different imbalance or "over-correcting"? I'll give it a try and post results.
Great info as always Mike. Maybe I'll give the copper a try and see what happens.
One thing that continues to be different in my case is that I'm still clearly having some GI issues. Pretty much without fail, when I'm woken up during the night I feel like I'm having some kind of heartburn. I had a pretty bad bout of this a few days ago and I thought maybe I was overdoing it on the HCL supplements, but it also could have been something I ate. I had a sort of big lunch that day that contained breaded pork which may have disagreed with me for some reason. I remember a few years ago the first time I had a massive GI problem was just after I ate some store-bought fried chicken (which I love). I was in pain for days after that... So maybe it's a gluten thing although I've fairly careful (except for that one lunch recently) about staying away from gluten.
Thanks once again for sticking with this Mike even after you're feeling better.
Well it's nice to find a thread with similar symptoms to mine, and also disappointing that so few have had good results. My tremors or spasms began 3 months ago. Happens about 10 min after lying down. Either to sleep or a nap. Keeps me up all night. Tremors center in my chest and back. Fingers tingle as well. Very similar to all others here I have gone through every test around. Cardio ok. Endo ok. Neurology ok. Gastro ok. Only thing they discovered was severe sleep apnea. Been going to mayo . On propranolol and Lunesta for sleep. That helps somewhat . Tried herbal supplements as well. I am surprised with all this time on this subject there are so few answers.
Glad the clonazepam is giving you some relief Toby.
Just checking in. I have been taking Clonazepam at 3mg for a few months. It has less side effects than any other prescription. I tried carotene as mentioned earlier by Mike. I was able to cut Clonazepam to 1mg without much problem. I would recommend Clonazepam to everyone. It knocks this down to where you don't care about minor tremors. Stress is gone.
I recently managed an outage at a power plant that was stressful,and tremors notched up a little. Now they are going back down.
It has been over three years now so thinking if I just come to terms that it will wear off or stick around there is nothing anyone can do. I have spent over 30K out of pocket and a few hundred grand of insurance.
Thought several times we were on to something to find out doing nothing works the same.
Extremely high stress brought this on for me and this increased the stress more. Just know this is not deadly but a pain to deal with and you will sleep better. That maybe the ultimate cure.
I have been fixing things my whole life,but this one is sure kicking my *** for a fix.
Anyone have a continual low temperature? Mine averages around 97.
Hi,Suri Okay so you asked how often do they occur-They are on and of so in other words it doesnt happen everytime im asleep.Maybe like every other night.And like I said before it lasts like 10 sec. with no pause in between.You asked has anyone seen me have these in my sleep the answer is no cuz I sleep alone but I did wake my cat up once when I woke up with rapid movement in my arms they went all the way up and all the way down like three times and stoped which is a first and not one of my "normal" tremers. And they do stop on there own.Its strange its like when its happening I cant concentrate on anything so I cant even will it to stop.I read what you said about stress and anxiety and how that might be a factor but Ive had that from a verrrry early age so why would these things be happening now....Still confussed-Crystal
Thank you so much for all of the information which you shared regarding the tremors. It has meant more than you know to find another person out there that can relate to this unnerving issue. YOU are a good person for sharing this! It has given me the hope I need at this time. I am exhausted as I write this as my nights get worse each night it seems. I had high hopes that I was going to have all kinds of good news to report to you because I made a trip to Whole Foods and bought all of these products that I was sure were going to impact this condition but to no avail... I have a sleep study scheduled for Tues. Night and an appointment with an integrative health Dr. on Thurs. Have you ever thought that this could be a brain tumor? I feel preasure in my head but can't decide if it is just because my rhythms are so off right now and I am so tired. I am an otherwise upbeat positive person and I certainly do not want this to take away my joy for life and living. I will say that my perspective becomes so destorted with little or no sleep. I have been doing some research on different nutrients and the effect on our bodies if we are deficient in them. There are definitely some links but I have yet to figure this one out.
I will keep you posted as all of this unfolds. Hopefully good news is waiting around the corner. Best Wishes and THANK YOU! dwc589
Hi, Crystal_blue_girl, thanks for your reply and how are you? I suggest you need to get examined and investigated properly by a neurologist as your body jerks still continuing. Although it is strange, there might be possible rythmic movements causing you the jerks. It would be better if any of your family members can observe you for the jerks in sleep. There can also be sleep deprivation and stress might worsen this further. Relax and try to go to sleep as early as possible. You can also get a sleep study done. Take care and share your thoughts.
Hi, dwc--I'd like to share the following opinions with you in reference to some of the points you have made. First of all, I doubt very much, in my own humble opinion, that a brain tumor could be the culprit in our situation. I think other body faculties would be affected as well, besides causing the tremors if a tumor was "involved." When I don't sleep I get head discomforts, which I most definitely attribute to the lack of sleep. I have learned in the last two years that lack of sleep can disturb the natural "rhythm" of my body as well as my mind to the point that I cannot reason things out as accurately as should be expected from a "normal" person. This is all transitory--It all comes back as soon as I get some rest. The following are my thoughts of what can possibly be causing our problem. I have drawn these conclusions after gathering as much empirical data as possible. This data comes from medical consultations, reading and simple gut feelings. Thought #1: Our problem can be caused by diet. I just have this strong feeling that we are eating something that our brain simply does not appreciate. In response to this I have started a journal of everything I eat every day. Hopefully, when I get bad tremors I can go back to my journal and maybe, just maybe, there is a correlation between the two. Thought #2: Allergies--I am starting to realize that the worst of my problems manifest themselves during the spring time and early fall. I am not taking any medication for allergies, for I have learned that those medications, among other things, can cause tremors and insomnia--something, for obvious reasons, I want to stay as far away as possible. If my upcoming sleep study will fail to reveal any obvious conditions, I will talk to an allergist. Thought #3: Exertion. As I have mentioned in my previous editorials, I ride my bicycle to work everyday (twenty miles round trip). And many a time, I go riding with my buddies during the weekend--Sometimes for up to 100 miles in one weekend. I'm sixty years and I think by body is asking me to slow down. Well, I'm going to listen to my body--As of yesterday, I going to cut back my exercise routine by half. This decision could not have come at a worse time, considering the price of fuel. I'm going to ride my bike to work only three times a week. I'll see how my body reacts to this. Thought #4: Plain anxiety. I did mention this before, but I would like to readdress it. The tremors wake us up, but I really believe that what keeps us awake is the anxiety we experience as a result of the tremors. What has helped me tremendously is going to bed with the mindset that I’m going to be awakened by the tremors. When the tremors “arrive,” I was expecting them. In other words, they are not as much of a surprise any longer. Again, this has helped me a great deal since it has reduced the amount of anxiety that is caused by the “unexpected’ tremors. I’m pretty sure your sleep study will reveal a great deal. I only wish mine was scheduled on Tuesday, as well. Mine is not going to take place for another 40 days or so. Thought #5. I think we could be experiencing some type of epileptic seizure, which only manifest itself when the brain is the sleeping mode. The sleep study will clear this one up. Just think how colorful things will be once your sleep study is conducted, and the answers start to pour in. Just a few more days--hang in there, my friend—Good luck—Please keep in touch. Bobito.
Thank you so much for all of your thoughts on this. You definitely have a way of putting things into perspective for me as I am loosing my perspective with the lack of sleep. This weekend I tried an Ambion tablet for the first time ever...(I am very anti-drug as I can see you are also) It was not the control release just the regular. My husband had them from work for international flights. I went to bed at 8:30 because I was so exhausted and I awakened from my drug induced sleep at 12:45 a.m. I then could not go back to sleep until 6:00 a.m and slept until 8:50... I think I am so afraid of having the tremors that my body has decided not to sleep at all... Yesterday my husband and children were starting a garden and I decided to read in the hammock thinking how relaxing would that be to be surrounded by your family happily at work and the birds chirping etc...I was able to rest but never could go to sleep. I have been awake for most of the night F,S,and S. This morning my mom found an interesting report on www.adrenalfatigue.org/sleep_disorders.php which could be enlightening. it souns like cortisol levels could be to blame. Do you feel a little hungrey when you awaken with the tremors? I am feeling hungry for the first time ever in the night. Do you ever feel like you have an electric generater in your upper body as you try to go back to sleep? The interesting link in this equation is that I usually feel peaceful when I go to bed but my body is way more agitated when I awaken which makes me think this could be blood sugar related. Try to pull up that article and see what you think about some of the points made. If you can't get it via the link I sent then try www.adrenalfatigue.org and then type in "sleep disorders." Maybe we're onto something yet. Your levels of bike riding I would think would be a very healthy thing for you but maybe because you exert so much in the day you need to supply your body with a healthy protein, high quality fat and unrefined carbs as a small bedtime snack to see your body through the night. It is in the article. Hopefully we can have victory over these crazy tremors sooner than later. Have a happy day! dwc589
Hi, dwc--How are you? Did you have your sleep study last night? I read your last post with great enthusiasm. Yes, I do experience some hunger, but not when the tremors wake me up, but just before I go to bed. Based on your recommendation, I'm going to eat a little something prior to bed. Who knows, just as you said, maybe we are onto something here. Yes, I do feel like a miniature electric generator (very lucidly described) sits on my chest after I'm awakened. This "generator" stays on for about 10-15 seconds, then it shuts off completely. This happens every time the tremors wake me up. At any rate, thank you very much for recommending the article. In fact, I might buy the book that the article is extracted from. I'll keep you advised on this one. Hope things are better with you--Keep in touch--Don't forget to share with us the latest on your sleep study. I'm pretty sure a number of us are extremely interested to hear about it. By the by, when I need to take a sleeping pill, I take "Restoril"--This one has the least number of negative side affects of all the pills I have been prescribed. I read about it on the Web and found out that the U.S. Air Force prescribes this one to its pilots when they are afflicted by disturbances in their circadian rhythm. I figure it must be pretty safe if the Air Force allows the pilots to use it--I hope! Have a happy day. Remember to be happier everyday that goes by, for it means we are that one day closer to the day we are cured of this malady. Bobito
I'm not sure what happened to my earlier posting as I wrote quite a bit earlier today and it has now vanished... as I said earlier so sorry for the delay in my response to you. My week was quite trying. On the night of my scheduled sleep study my husband had to take our 11 year old daughter to the ER with chest pains. I had taken her to the doctor the previous week and we thought it was reflux causing her heart to burn but on Tues she had the pain in PE which was concerning. She is 40th percentile in her weight and very active so again no outward signs of problems. Right before I went was asked to turn off my phone for the study to begin I found out that there was something showing up on her tests and that they would have to stay for further testing... That has all turned out fine we think now but can you imagine sleeping under those circumstances? Especially since I was coming off my weekend of insomnia. So the study was a bit of a disaster. I slept for 45 min. the first half of the night and 30 minutes the second half of the night. I have not yet gotten the results but wonder what will be concluded on almost no sleep. Now I am taking Lorazapam which is an anti anxiety med. hopefully just for a week or so to get me back into a relax mode as I truly can not function on so little sleep. It has helped to relax me but I am beginning to feel the tremors again. I will meet with my integrative health doctor for the evaluation of my screening on Thurs. and I still would like to have a MRI to make sure all is well with my brain. I just can not imagine what is causing this. I will keep you up to date with my sleep study and other results as I receive them. I can't tell you how much I have appreciated all of your thoughts and encouragement through this. I look so forward to your sleep study to hopefully learn something for both of us. So sorry to let us down on that one! Keep me posted on any new findings! Have a good night! dwc589
No, I cannot imagine being able to sleep under the conditions you have shared with me (your daughter's condition)--Even a human being with perfect sleeping patters could not have possibly slept under those conditions. I take my hat off to you for the tremendous resilience and character you have demonstrated in bearing such an incredibly heavy "load" and still manage to move forward. But as you can see, your daughter is going to be fine and you, in turn, will also be just fine once your study is analyzed. Obviously, I am not in any shape or form an authority in sleep studies, but based on some readings I have done, there is no need for a long period of sleep in order to interpret one's condition during a sleep study--I can only guess that the fact that you managed to sleep for some period, it is enough for the electronic equipment (all the probes attached to you) to detect any anomalies in your sleep/awake modes. You seem somewhat preoccupied with the existence of a brain tumor--for whatever is worth to you, I really don't think so. I have gone that route as well. I sincerely believe that when we are deprived of as much sleep as we have, we have a tendency to mentally wonder into tangents that are simply self-created because we are angry--Yes, angry! Besides anxiety, we also feel anger at the fact that the rest of the world is "fine" and we are the only ones afflicted with a malady. That's how we see the world around us--Everyone is just fine--Why are we the "only" ones with a problem? Well, I must admit, nature is heartless but it (nature) has not set its cross hairs on just us. Nature has its "guns" trained on everybody; it so happens that most people don't want to talk about how their lives really are or they simply are not lucky enough to find other people who endure the same system "malfunctions" so they talk to each other and find some solace in sharing. We have found that solace and therefore we are better off than a lot of people in this world. I took your advice and follow some of the steps in the article you recommended I read. I have eaten a spoonful of peanut butter just before I go to bed. Honestly, it has helped me. It could be just coincidence (or the placebo affect kicking in), but I have been able to sleep about five hours a night for the last four days. Could all this be purely psychological?--It could be, but I am going to continue eating my peanut butter until it ceases to be effective. The tremors are mild, but I have still managed to sleep. My only regret is knowing that I have yet to reciprocate this advise by helping you in some way. I also have lost some of my postings. I wonder where they go after you hit the "Post Comment" button. I guess the same place where white goes when snow melts. In order to remedy this situation, I have started to type my comments on a WORD document and then copy it into this site. It has worked nicely--I have yet to lose another one. Looking forward to hearing from you. Warm regards, Bobito
Hi, dwc--How are you? Has your sleep study been "decipher?" I' m feeling a bit better. Still some shaken by the tremors, but I have gotten a little better at tolerating them. Let us know how you are coming along. Bobito
Sorry for the delayed response. I have been preoccupied with myself and
my crazy sleep patterns as well as my daughter who is still having chest
pains. I have been trying all sorts of things since we last spoke but
still have not found an answer for us. I feel that my sleep study was
inconclusive since I never had the tremors during the night. Because I
had insomnia it was just labeled "anxioty." I just am not thoroughly
convinced by this diagnosis when the study was incomplete. Have you
found anything new that works for you in dealing with this. With your
son's medical background does he have any ideas or theories? I did talk
to a neighbor that had the night tremors three years ago and found that
it was hormonal. She was 41 at the time as am I now so I am now going to
investigate this avenue as well...not sure that helps you at all but I
would think that men undergo hormonal changes as well, we just don't
hear as much about them. How many more days until your sleep study? I
am counting the days with you. I wish I could have offered more insight
with mine. The one interesting tid bit of info regarding the anxioty
theory is that I have been taking the Ativan also called lorazapam to
help me sleep and I still have the tremors on that "anti-anxioty" drug.
This puzzles me. I would think that the tremors would be non-existent on
the drug if it was indeed anxioty. I am able to fall back to sleep more
readily than without the med but the fact remains that the tremors are
still there. By the way I did check the Adrennal Fatigue book out of
the library and it does not seem like the answer to the puzzle either.
I love hearing your insight on things so keep me posted on your latest
discoveries. I will try to be more prompt with my response. I am so
thankful to have this dialogue since two heads are definitely better
than one! Have a wonderful day and be sure to smile about all the GOOD!!!
Your friend, dwc589
Hi, dwc--very nice hearing from you. I was getting a bit concerned about your status. Well, let me start with my sleep study. It was supposed to take place next week, but that clinic discovered that I had been scheduled for a sleep study without an “interview” with a sleep specialist. Thus, they gave an immediate appointment with the sleep specialist. He reviewed my records and listened to my situation and determined that my problem was not a sleep problem. He figured that if I’m able to fall sleep, which I am, and the tremors wake me up, which they do, it is a tremor problem that is causing my sleep problems. It is not a sleep problem. He feels that it is a heart problem of some sort that is causing the tremors. I explained to him that I have had multiple cardiograms and 24-hour halters and they have revealed nothing but a very healthy heart. He added that what I needed to have was what is called an “event monitor” to be carried for two weeks. He said this is the only way to “smoke” out heart irregularities that escape the cardiograms and the 24-hour halters. And that’s where my situation stands as of right now. On Monday I’m going to the clinic to be fitted with one of those apparatus. As far as my children are concerned, actually I have two and both are doctors. One is a radiologist and the other one is a dermatologist. To be honest with you, they don’t help that much. The radiologist is extremely stoic and, consequently, very indifferent to compassion and kind advise. The dermatologist, on the other hand, is very compassionate and goes out of his way to make me feel better with his “opinions”. Bottom line: All they really have is OPINIONS—In fact, my wife feels that they simply don’t know and, therefore, I should not ask them about it anymore—All that means, she added, is more opinions for me to have to psychologically and emotionally deal with. One thing the dermatologist did about six months ago was to have a friend of his (a sleep specialist) called me and asked me about my situation. His OPINION: To have a sleep study administered. I have decided to follow my wife’s advice. At any rate, I have been able to sleep a little better—The tremors still there, but not as intense. I have gone through this phase before—They may increase in intensity anytime. I’m going for the event monitor—Who knows, it might reveal something of substance. Needless to say, I feel pretty bad about your daughter—Neither you nor your daughter deserve this. I’m pretty sure things will get better for all of us. You mentioned about hormones—Yes, that’s all been checked. Everything is fine in that department. Thank your for bringing it up. I will keep you advised if anything of substance develops—Most definitely, I will share with you the results of the event monitor. Your friend, Bobito.
Hi bobito, how are you doing? Hope you might be feeling better these days? Are you getting good sleep now or still you do have the jerks at night? Chronic fatigue and night muscle cramps can worsen it. Do keep physically active and physical therapy might be helpful. Also a gentle massage would soothe the aching muscles and give comfort to you. Hope to hear from you. Take care and share your thoughts.